Monday, May 13, 2013

Twist of Lyme

I debated whether or not to post on this subject here, since it's completely completely off topic... but you know, I've got a few readers now (not just my parents and my husband, but people! People I don't know in real life!) so I figure, why not? This is my space and today I'm using it as my platform. If something I share here educates or helps even one person, then it's totally worth it. So here goes. I'm adding a jump break from the get-go on this one, because this is gonna get long.

May is Lyme Disease Awareness Month. Just yesterday, I had another follow-up appointment with my rheumatologist. I am now starting my sixth month of treatment for disseminated Lyme.

I have to admit, before all this, the only thing I knew about Lyme was that there had once been a girl on MTV's Real World with it back in the late 90s. Remember Irene? More than a decade later, I moved to Suffolk County, New York--the tick epicenter of the universe--bought a house on a densely wooded lot, and waded through knee-deep groundcover almost daily in shorts and rubber flipflops. BECAUSE I DIDN'T KNOW ANY BETTER.

No one talks about Lyme, even out here. Before I was diagnosed, I had never seen a single piece of Lyme or tick education anywhere. My primary care physician, who I see annually for routine physicals, never once brought it up and never asked about potential risk factors.

Somehow, though, I had heard that Lyme caused a rash. A "bulls eye" rash. You've heard that too, right? Yeah... well, what you don't hear is that it isn't necessarily always "bulls eye." If you Google images for erythema migrans (EM) Lyme rashes, you'll see plenty of more solid appearing presentations. What actually happens is that the center of a previously solid rash tends to clear first, thus leaving the bulls eye look. The primary distinguishing feature of an EM rash is more its size--more than 2 inches across--and the fact that it expands in diameter over the course of several days. Also, the rash can be present at sites other than where the actual tick bite occurred.

The sad thing? I totally had that. More than once, all over my stomach and flanks. The sadder thing? I showed those 6-inch red circles to my husband and actually joked out loud, "Hahahaha! I probably have freaking Lyme disease!" but dismissed it instead as some freakish hyper-reaction to a mosquito bite or something because it wasn't glaringly "bulls eye" in appearance, and never saw a doctor. Oops!

I won't bore you with a detailed list of symptoms (although you should definitely check out Columbia University Medical Center's Lyme and Tick-Borne Diseases Research Center for more information), but in my case: I felt like I had the flu for about three years. No joke. I also had crazy inexplicable joint issues--first my hips, then a shoulder, my ankles, knees, wrists and feet... There were times I could barely do the stairs, and others when I was driven to tears just from trying to open a package. I'd go to my PCP after enduring months of joint swelling and pain in a particular location, only for it to magically disappear shortly after mentioning it to the doctor. It made me look and feel like a complete lunatic. I'm very self conscious of appearing like a lunatic to doctors, so I started to keep my symptoms to myself, and didn't really bother to complain about the fact that I couldn't remember the last time I felt well.

Around the same time, my toes became numb (they still are) and eventually I started to get crippling migraines. I had never had a migraine before in my life, yet beginning last March, it became a near daily occurrence. I shared the toe and migraine issues with my PCPs office, but never once was Lyme mentioned, and I wasn't tested for anything. I was given barbiturates for my migraines.

Over the summer, I suffered several bouts of "facial palsy," where I'd just wake up with one eye or half of my mouth all swollen and droopy. Super attractive. I figured it was related to the migraines, which had really begun to affect my ability to work and take care of everyday things, so I self-referred to a neurologist. The neurologist recommended that I have a number of blood tests completed, one of which was a Lyme test. "Standard protocol for new-onset migraine patients," he said, not because he actually thought I had Lyme. Of course I wasn't concerned--because I still didn't have a clue--so I put it off for a few more months. Then, when I finally scheduled the bloodwork, Hurricane Sandy came through and shut down my doctor's office for over a month. It was nearly Thanksgiving before I was finally tested. I'd been on Topomax (for migraines) for months; it wasn't helping.

Of course my test (the C6 peptide) came back positive. But the second-tier Western Blot (often used as the gold standard confirmatory test, but perhaps erroneously so) came back negative, so my PCP insisted I did not have Lyme but possibly Lupus or some other exotic autoimmune condition instead. The initial test, he said, was probably just a lab error. So he sent me to a rheumatologist who did a boatload of additional tests and, lo and behold, everything was completely normal. Everything except the repeat Lyme test (and one other measure of inflammation, also consistent with Lyme).

I've now been tested for Lyme three times, and my C6 is always impressively positive, but I can't get that stupid Western Blot to concur. There are lots of potential reasons for this [which are beyond the scope of this blog post] but suffice it to say there is a huge amount of controversy around Lyme disease diagnosis and treatment, and Lyme testing is far from perfect. Lucky for me, my rheumatologist thought my clinical picture sure looked like Lyme, so he put me on oral doxycycline and waited to see what happened.

And my body went berserk! My entire first week on doxy, I ran a high fever, developed intensely painful, golf-ball sized lymph nodes throughout my head and neck, and generally felt like I was near death. I know that sounds like a total exaggeration, but I assure you it is not. Apparently, this is normal and also supports a diagnosis of Lyme... and happily, that was the worst of it. After that, things began to slowly but steadily improve until--about three months later--I felt darn near normal, save for some lingering joint stuff. I'm off antibiotics now, but continue to take other medication to address the arthritis. Overall, this is the best I've felt in a very long time. I have not had a single migraine since December! I still feel like somone is jamming pocket knives into my wrists and knees from time to time, but that's a hell of a lot better than trying to trudge through life with an unrelenting flu. And hopefully someday I'll conquer this piece of it too.

I wanted to send that neurologist--the one who recommended I get a Lyme test--a big ole fruit basket. I felt like he had quite literally given me my life back. I had my test results sent to his office, and promptly received a phone call in which I was told, "There's no way you have Lyme. You need to stop seeing that doctor immediately. In fact, give us his name. We want you to stop taking all medication and make an appointment with an Infectious Disease doctor instead."

Say what!?!?! I was dumbfounded. But apparently, three positive tests and a complete remission of nearly all symptoms--including my daily migraines--since starting treatment in December was all negated by that one, questionably accurate negative Western Blot test. Nevermind the fact that I live in a high-risk area; am a shade gardening fool (and thus exposed to ticks continuously); never protected myself or otherwise checked for ticks; and had a classic list of symptoms, including several EM rashes... Nope, it couldn't be Lyme.

"You're aware of how controversial this diagnosis is," my neurologist said to me. Good grief. I am now, but I sure don't understand why. Dermatologists are giving out antibiotics left and right for acne, but heaven forbid we give someone a trial of doxycycline when ALL SIGNS POINT TO LYME and they've been suffering for years. I had every risk factor in the book and a number of obvious symptoms, yet multiple doctors--doctors in a Lyme endemic area, no less--overlooked or dismissed all of this. I shudder to think how long my misery would have continued if it weren't for my rheumatologist. He's the one who should be getting that fruit basket.

But how many people aren't so lucky? How many people have been erroneously brushed off, ignored, or otherwise denied the treatment they need to give them their lives back? And how many people are like I used to be--dangerously unaware of it all? I'm guessing LOTS OF PEOPLE.

No matter where you live, but especially if you live in the Northeast, I'm begging you--please take the time to visit The University of Rhode Island's TickEncounter Resource Center and read as much as you can. Learn what a tick looks like in every stage and know how to remove one if found. Learn how to protect yourself, your pets, and your property from ticks, and then share that knowledge with every single person you possibly can!!!

When caught early, Lyme disease is very treatable; less so once it has disseminated. But we don't need to let it get that far, right? I feel like an after-school special here but, "The more you know..." really is true. I'm still gardening my butt off. I may wear a veritable moon suit while I'm doing it, but there's no way I'm letting a stupid BUG deprive me of the joy I get from being outside with my plant babies.

Have fun out there, people, but be smart. And happy Lyme Disease Awareness Month!